This weekend was fairly calm – well, as calm as the chaos created by Eli and Anna. On Saturday, David’s weight was slightly down, so the team discussed increasing his volume again or holding steady for one more day. I did request we hold for one more day since I’ve seen a couple large spitups and I’m not sure if David would be able to handle the higher volume yet. He usually needs a couple days for his tummy to adjust. Today his weight was up quite a bit, so we are happy to stay put. Our goal for the next few days is for David to maintain his status quo, with a couple adjustments to hold some medications to prepare him for surgery.
On Saturday, David had his first true bath while being in the hospital. Up until now, he’s had sponge baths or wipe downs. He loved hanging out in the tub, but hated getting prepared for it and getting out. Sunday was his first diaper blow out. I guess he just doesn’t want to stay clean for too long.
Saturday, David also pulled out his feeding tube for the first time during this hospital stay. He had been leaving it alone so much better than last time, but we were also keeping very close eyes on him. His arms were free and his team came in to discuss plans and questions, and his nurse also popped in to check on him. She said she looked at him, looked up, then looked back down and during that quick time she looked up he pulled it out. He clearly knew he had an opportunity and took full advantage of it.
I took the older kids out of the room while David’s tube was replaced, but we came back in time to witness the x-ray to check its placement. Eli thought that was pretty cool – kind of like Marshall from the Paw Patrol’s x-ray machine. We stepped out of the room while she took the picture and then Eli got to see the image on the screen.
As for David’s surgery, I inquired about which shunt would be used for David. It sounds like he will have the BTT shunt. This was chosen due to his tricuspid valve issue and putting the Sano shunt near that valve may not result in the best outcome for David. There are pros and cons to each shunt type but a lot of the time the best outcome will be to do whatever shunt your surgeon is most comfortable with or which ever one is best for the patient. The shunt is just temporary until the Glenn surgery, and it is needed because the pulmonary artery trunk is used to make the aorta larger. So, blood needs to be routed to the lungs somehow and that’s what the shunt is for.
The older kids spent a lot of time in the Endzone this weekend playing with various toys. They also spent some time at the playground and just playing games in David’s room. Today we enjoyed a little bit of the puppy bowl and some of the superbowl before it was time to go home for bed time.
I’m so glad to hear that David put on some weight 👍🏻 He does sound like he is a bit of a prankster though 😂😂😂 You all get a good peaceful night’s sleep😴💤😴💤😴💤😴💤
What a great family photo 💕
]Your family pictures are beautiful! David is so cute and seems to be aware of when he can take that feeding tube out! Praying for him through the surgery and recovery.
Love the family photo. Enjoining all the photos you do On how much David is changing. Praying for David to gain weight so he can have his surgery. Also praying for you & your family during this time of waiting for the next step.
Always love to see all of the family photos… David looked pretty comfy in the tub. 🛀 It is so nice that the hospital has the area for Anna and Eli to play. Reading your journals and I am amazed at the knowledge you have learned for everything David is going through. Sending prayers, hugs and love for you guys and especially for David. 💖
Great photos, thanks for sharing. And it’s wonderful how the hospital has a heart for kids and families (even when it’s not heart month!). I’m glad to hear what a fighting spirit David has, even though he’s making some trouble for you! And that he’s a water baby in the bath, and gained some weight back, too. Glad he could stay longer there, like you wanted. Praying for you all!